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As a journalist I have written about social issues and international affairs for the Guardian, the Independent, New Internationalist, Huffington Post, Equal Times and the Big Issue in the North, among other titles. I now work at the University of Leeds as a qualified careers professional, helping international students fulfill their career ambitions

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The Teletón: Image and reality of disability rights in Chile

Sitting in a TV studio, nine-year-old Catalina
is so happy she can barely speak through her hysterical sobs. A video
documenting her six month rehabilitative transformation from a
wheelchair-bound little girl to a buoyant, able-bodied child has just
been broadcast to millions of Chilean viewers.

“I just wanted the chance to have an operation,” she weeps, “I never imagined my rehabilitation would be so successful!”

Interviewing
her live on stage, the flamboyant presenter turns to the camera and
sends out a final message before the commercial break: “Let there be no
doubt, we are the world champions of solidarity.”

Bar general election years, Chile has united around the common cause of
raising money for disabled children annually since 1978. The phenomenon,
known as the “Teletón,” occurs in the form of a 27-hour fundraising
show broadcast live on every major Chilean TV station, and sponsored by a
number of major business partners. Money donated by corporations and
individual members of the public helps to finance 11 Teletón foundations
scattered around the country which offer rehabilitation services to
children and young people under the age of 25 with specific
disabilities.

Presented by host and founder Mario Kreutzberger -
better known by his stage name Don Francisco - popular musicians perform
live music, comedians leave audience members in stitches and young
children relay emotive accounts of the incredible standard of care they
received as a consequence of the money raised the previous year.

To
first approximation, it may seem odd that a charity event with such
seemingly noble ends could be the subject of vehement criticism. Yet a
number of noted disability activists argue that the show deflects
attention away from the government’s lack of investment in services for
Chile’s disabled, and allows businesses to profit from the publicity
generated by the campaign.

Alejandro Hernández, president of
Chile’s leading disability NGO, the National Foundation for the Disabled
(FND), believes the Teletón is disturbingly symbolic of the state of
disability rights in the country.

“If children are required to
cry hysterically on TV just so they can have access to something as
basic as a wheelchair, what hope is there for the disabled in Chile?” he
asks.

Despite being one of South America’s strongest nations
economically, Hernández insists the Chilean government has consistently
failed to provide adequate disability services, and accuses the Teletón
of successfully masking this fact by delivering an annual message of
false hope.

“Unfortunately the Teletón gives off a smoke screen
which prevents the majority of Chileans from understanding the reality
of the situation,” he says. “For example, people remain unaware that 97
percent of disabled people have never had access to comprehensive
rehabilitation, believing instead that this annual campaign covers
everything - which is very far from the truth.”

According to the World Health Organization
(WHO), around 15 percent of the world’s population live with some form
of disability. The figure for Chile stands at 20 percent, owing in part
to a high rate of mining and fishing accidents. In 2008, Chile ratified
the U.N. Convention
on the Rights of Persons with Disabilities stating that, under
international law, the government must “promote, protect and ensure the
full and equal enjoyment of all human rights and fundamental freedoms by
all persons with disabilities.”

But Figures from FND
paint a bleak picture for disabled people in Chile. The NGO claims only
1 percent of disabled Chilean adults have a work contract and a
startling 42 percent of disabled children fail to complete basic their
basic education.

Hernández contrasts Chile’s situation with that
of its progressive neighbor, Argentina, where there is no Teletón and
the disabled rely entirely on the government for their rehabilitation
centers. Unlike Chile, Argentina has its own domestic laws covering
those with disabilities, in addition to ratifying the U.N. convention. The Unique Disability Certificate Act
guarantees disabled people certificates from the health ministry, which
they can use to obtain a range of health services. Those suffering from
disabilities are also given passes which grant them unlimited access to
free transport.

“In Argentina people are more aware of their
rights, that’s why they don’t have a Teletón,” argues Hernández, “It’s
time that the rehabilitation centers of the Teletón were passed into the
hands of the state so the Chilean government can take charge of this
issue once and for all.”

On the streets of Santiago, the scale of the problem is all too visible. Mauricio Muñoz, 29, is one of an estimated 99 percent of disabled
adults without a work contract. Blind from birth, he earns money
selling goods on a street market stall and has set up his own internet
radio station run by blind people for blind people. Muñoz has never
qualified for Teletón assistance (which offers no services for the
visually impaired) and reiterates Hernández’s assertion that government
assistance for people like him is minimal.

“The government hardly
spends anything on disabilities,” he says. “There are other countries
where the situation is better - in Argentina there’s loads of support
but here we lack government support, and the institutions aren’t doing
their job properly.”

His feelings towards the Teletón are mixed.
“It’s a great way of getting the people together behind a great cause,
but much more is needed. It should help people with other types of
disabilities, there should be a Teletón for all disabilities,” he
argues.

Less nuanced are the views of 49-year-old Claudio
Gonzalez, who sits in a wheelchair selling watches on the same street:
“They [the Teletón’s sponsors] use us to earn money, they get publicity
from the show. They want us to make the public feel sorry for us so they
can profit!”, he says.

Perhaps surprisingly, Executive Director
of the Teletón Ximena Casajeros, does not altogether dismiss the
criticisms aimed at her show. She claims the Teletón’s founders naively
believed they would be able to provide a solution to Chile’s disability
problems within five years of running the event, a prediction she now
describes as “a massive error.”

Asked whether she thinks Chile
should be following the Argentine model of public investment in
disability services, Casajeros insists the two countries are
incomparable.

“Argentina is a country which has different laws to
ours and has free healthcare for everyone - which our country does
not,” she says. “If we had a government which had laws and social
benefits, a society in which the disabled were integrated and not
excluded we’d be having a different conversation.”

Nevertheless,
Casajeros remains convinced her show has been responsible for spreading
awareness of disability and forcing the Chilean government to confront
the issue, a point which is reiterated by arguably Chile’s most
prominent disabled person, Catalina Parót.

Parót rose to
prominence in 2010 when she was appointed national properties minister -
the first and only disabled cabinet minister in Chile’s political
history. As a child in the 1960s, she remembers feeling socially
isolated, forced to endure the stigma of being disabled at a time when
society did not regard her as an equal. She watched as her classmates
deliberately crossed the street to avoid talking to her, but is grateful
to the Teletón for creating a shift in public conscience which, she
claims, allowed her to pursue a career in frontline politics.

“I
know what it is like to grow up with a disability,” she says. “What Don
Francisco has done, beyond any criticism that might exist, is to make
people confront their fear of the disabled.”

2010 was also
significant for being the year the Chilean government created SENADIS, a
public body set up to provide technical and financial assistance for
people with disabilities. Funding, however, remains a major problem. In
2011, SENADIS’s budget was around US$22 million, less than half of the
US$55.4 million raised by the Teletón in the same year.

Parót admits these figures are unacceptable.

“It’s
really important that funding for SENADIS is significantly increased,”
she says, “that way communities, private organizations and charities
which are dedicated to helping people with disabilities and
rehabilitation can be given far greater resources.”

Outside her
office in central Santiago, red and white Teletón posters with pictures
of smiling children flap around in the warm spring breeze. Volunteers
wearing Teletón t-shirts persistently hassle passer by, shaking colorful
buckets and handing out leaflets. The country is gearing up towards
Nov. 30, when close to 17 million people will tune in to witness a
record amount of money raised for disabled children like 9-year-old
Catalina. This year, however, there is even more at stake than usual.
Next year’s general election means there won’t be another Teletón until
2014, so the funds will have to last twice as long.

But while the
hype preceding the event is inescapable, not everyone feels excited.
Although Teletón money greatly surpasses that of government expenditure,
only 7 percent of Chile’s disabled population actually benefits from
it. This discrepancy is reflected as much in the criticisms of activists
like Hernández as in the despondent attitudes displayed by many
disabled Chileans.

From his market stall, an exhausted Mauricio
Muñoz is ready to pack up for the day. As he does so he mutters
something under his breath, inadvertently capturing the mood among many
of his disabled peers.

“The Teleton runs for less than two days,”
he laments, “but the disability that we are burdened with lasts the
whole year round.”

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